Anyone tried Neratinib?
 

I have been looking for clinical trial to start since I have finished my Herceptin. I looked up the vaccine trial but it is too far away from me and requires overnight stays. The contact person referred me to the clinical trial using neratinib. I think my onco suggested this but I can't remember if the name of the drug was the same.
She stated that it causes diarrhea. How bad

Has anyone tried this one? How bad was the side effects?
Suzanne

Re: Anyone tried Neratinib?
 

I haven't tried that one, but there were several discussions on trials at San Antonio BC Symposium in 2009.

The main side effect was indeed diarrhea, almost universal, but interestingly it did not seem to cause people to drop from the studies. These were trials in Stage IV patients - so this surely influenced that stat (i.e. patients on this as a life extending shot might view side effect severity differently than someone seeking "extra insurance" to prevent recurrence). But either way, it seemed that it was reasonably manageable.

Re: Anyone tried Neratinib?
 

I am new to all of this so bear with me. I am currentely on Neratinib. I am on month 3 of the trial and I too am looking for someone, anyone who might be on it longer then me. The Diaherra is very bad at times. It can be controlled thur meds and my onc has lowered my dose twice now. I take 160mg a day and right now I am having 3 to 4 episodes a day. I notice all sorts of things being on this trial but diaherra is the most difficult. Let me get set up and we can talk more if you are interested. Like I said I just started on here and have not done my profile or anything yet. I would love to hear from more people on it myself.

Re: Anyone tried Neratinib?
 

I am also new to this site and I am on my second month of neratinib. The diarrhea is very bad at times and some foods I think make mine worse. I also started to have blister like places on my fingers and in between my fingers. My mouth also feels blistered. Toothpaste and certain foods burn my mouth. I'm going to ask my onc if this could be a side effect.

I am wanting to have reconstruction in November but my husband is concerned that I might not heal as well since I'm on this new drug. If anyone has any info or has gone thru reconstruction while on neratinib I would appreciate the advice.

Thanks and God Bless.

Re: Anyone tried Neratinib?
 

Charline, I am so glad to hear from someone else currently on the trial. I would agree that some foods make the diaherra worse at times but anything I eat results in fluid. I do not get blisters on my fingers but they do crack and bleed all the time. My nails are very brittle but they have been sence chemo. I have blisters in my mouth as we speak and my gums are often very tender.

I have a lot to say about surgery while on this drug. While on the drug I had a hestorectomy (April 13). On June 16th I ended up in the hospital due to the fact that the cuff did not heal right and 8 to 10 inches of my intestines exited my body. On Sept 29th it opened again and I am currentely healing from yet another major surgery. Three in 5 months and I am on restrictions this time for 6 months and in a signifigant amount of pain. This drug is a chemo and we know chemo compromises our ability to heal. I cannot tell you what to do but if you can wait I reccomend that you not take any unnessary ricks. My doctor said my body is struggling to heal and that I need to be very careful. She does think that the biggest reason for my issues is the stop in estrogen. It has made my tissue thin and brittle. I hope to that it goes in the books so that other women and can make informed decisions. Good luck and keep me posted. I am very curious to what and how this drug is affecting others.

Re: Anyone tried Neratinib?
 

Hello new members :

Congratulations for taking the plunge to start another trial drug. This trial has been in place (or some version of it) for about 3 years.

Here is a thread from this site in which you will find many other women who have taken Neratinib.
http://her2support.org/vbulletin/showthread.php?t=40993

Hope you will find some helpful information there.